As many of you know, I was diagnosed with a neuroendocrine pancreatic tumor in 2009. My tumor was small and slow growing, and I did NOT have regular pancreatic cancer. You may also know that this was my third cancer diagnosis, therefore, the title of my blog. I am grateful that you are reading this. I'm quite certain that your support and prayers helped me survive.

Wednesday, November 2, 2011

Are there really any coincidences in life? Here is one that I feel compelled to write about. Last week, Richard (my husband) and I went to a fundraiser in San Francisco. It was for Maccabi USA which is a non-profit organization “that endeavors, through sports, to perpetuate and preserve the America Jewish Community by encouraging Jewish pride, strengthening Jewish bonds and by creating a heightened awareness of Israel and Jewish identity.” Our son was a member of the 2009 USA team and competed in Israel in the triathlon and ½ marathon. Richard and I felt a slight obligation to go to support the cause. In addition, I am a fanatical swimmer, and Mark Spitz, Jason Lezak and Lenny Krayzelburg were going to be there and, quite frankly, I wanted to meet them! So we went, but somewhat unenthusiastically. Mostly because it meant getting dressed up for a dinner at the Four Seasons Hotel in the city…and, as you might imagine, I had nothing to wear! In addition, we were certain that we would not know anyone there. Also, it was on a Tuesday night, and Richard and I are usually asleep by 10 so that we can wake up early to swim at 6:00 AM. Therefore, our reluctance.

But, off we went. I found something in my closet to wear that was passable, not quite high fashion enough for SF, and clearly, my shoes were all wrong, but I’m quite sure no one noticed! We had paid a hefty price for the tickets, so at the very least we figured we would eat a good dinner at a fancy SF hotel! We were seated at Table 21 – way in the back, with a lovely group of strangers, all bonded together by our love of sports, Israel and things Jewish.

Anyway, that is not the point of my story, and, as I said, I do have an unbelievable story to tell. First let me begin by giving you some background information. Well, some numbers actually. This will make my story even that much more mind-boggling! According to an article in the NYT about Steve Jobs, “neuroendocrine tumors account for only about 3 percent of the 44,000 cases of pancreatic cancer each year in the U.S.” I found some conflicting numbers on the incidence of neuroendocrine pancreatic cancer – one resource reported that per 1, 000 000, the crude annual incidence was 1.8 in females and 2.6 in males, another source says it is 3.2 cases/1,000,000!

Anyway, whatever the actual numbers are, whatever the actual incidence rate of NE pancreatic cancer might be, we do know that it is a rare tumor. So much so, that it should be unlikely to meet someone randomly, with the same disease. (Although for full disclosure, in addition to Steve Jobs (whom I did not know personally), I do know 3 other people who have had this!) But, nonetheless, we have established that it is definitely RARE! And, the chance of meeting someone else with this is SLIM. But, let me go on with my story.

So, there we were at the “Legends of the Maccabiah Gala Dinner”, at the Four Seasons Hotel in SF, seated at Table 21, next to the loveliest man I’ll call Dr. J., an anesthesiologist. Why he was there, I’m not totally sure, but I liked him immediately because at one point early in our conversation he guessed my age to be way younger than I actually am. I told him that I loved him, right off the bat. There is something about someone who thinks you look much younger than you are that makes you just want to hug them. (That comes a little later!) Anyway, there we were, chatting about sports and Jews and families and work….when it somehow came out that I was a cancer survivor. THEN….the conversation went like this:

Me: I’m a cancer survivor

Dr. J.: I’m a cancer survivor too.

Me: What kind did you have?

Dr. J.: Pancreas

Me: Me too!

Dr. J.: But mine was neuroendocrine pancreatic cancer

Me: So was mine!

Me: Where were you treated?

Dr. J.: Stanford.

Me: Me too!

Dr. J.: Who was your doctor?

Me: Dr. Norton.

Me: Me too…..

OK….now for the spooky part…..Me: When were you there?

Dr. J.: July and August 2009

Me: Me too!

OK…so what are the chances? We were both at Stanford Hospital in August of 2009. We had very similar surgeries, the same surgeon, and were on the same floor. Dr. J. was sitting right next to us…. in a crowded room with about 250 people….at a fundraiser we almost didn’t go to….what are the chances?

So, we hugged, exchanged emails and phone numbers and are planning to get together soon in Berkeley. And, I did get to meet Mark Spitz, Jason Lezak and Lenny Krayzelburg. I’d say the evening was totally “meant to be”. In yiddish....it was bashert!!

Sunday, October 23, 2011

No, I had never met him, but he and I shared a great deal in common. In 2009, when I was first diagnosed with neuroendocrine pancreatic cancer, I said, “I have the same kind of cancer that Steve Jobs had.” (Since he was supposedly cured, and I had not yet been treated.) Not only was my diagnosis the same, but so was my surgeon, my surgery (as far as we could discern), and the hospital where we were both received our care. Soon after, the statement changed to “I had the same kind of cancer that Steve Jobs has” when he was looking badly and seemed like he wasn’t doing too well, and I had been treated. And now, I say, “I had the same kind of cancer that Steve Jobs had.” I hope beyond hope that whatever we once shared in common is now over. I pray that my path will be quite different from his. By now we have all read the reports that he put off treatment for 9 months and tried alternative therapies. Who will ever know if that made a difference in the course of his disease? Neuroendocrine pancreatic is not “the regular kind” of pancreatic cancer, but a much more curable and manageable disease. While my oncologist will not use the word “cured” for me, my surgeon will. I’ll take it. It’s just a word, but one that can completely change how you think about life. I now say, “I’m cured!”

Can you imagine what the past few weeks have been like for me? So many people have asked me how I handled his death. When Steve Jobs died, I was in Greece, on a trip of a lifetime where I was swimming from island to island. I was with my husband, and it was our 25th wedding anniversary gift to ourselves as well as a bit of a celebratory trip 2 years post Whipple surgery for my neuroendocrine pancreatic tumor. I was scared to go – afraid to travel so far from home in case something happened to me. I’ve had cancer 3 times, 8 surgeries and have been hospitalized more than 20 times. Many systems don’t work so well, and I get frequent bowel obstructions, which sometimes require me to be hospitalized. But I went, overcoming my greatest fears, and I did just fine. Except, of course, for the day that we heard the news about Steve Jobs. I had never cried so hard about the death of a person I had never met. Yet, how could I not overly identify with him, his cancer, his outcome? But I have to believe that I am cured, and my journey will not be the same as his was. It’s just a word, but it’s one that I’m holding on to. I’m cured.

Thursday, August 4, 2011

Today is an anniversary – it’s not my wedding anniversary or anything quite like that….it’s the 34th anniversary since my first cancer surgery. I was 21 years old, had just graduated from college and underwent a 10 ½ hour surgery at Sloan-Kettering Memorial Cancer Center in NY. I was in the hospital one month, and little did I know that this would be the first of many surgeries and my first of 3 bouts with cancer. But August 4th is an important day for me and one that I will never forget – how does one celebrate such a milestone? How should one feel on a day like today? Happy that’s it all behind me? Lucky that I got such extraordinary medical care all along the way? Scared that I might get “it” again? Grateful that I have lived as long as I have, and that I have such an amazing family and so many supportive friends? Yes….I think all of the above and so much more….and very difficult to put into words.

As I think about my life and my cancer experiences, I do, in many ways feel lucky. During the past few months there has been a video tape made of my journey, a radio interview and a magazine interview and photo shoot. I have in a very small way become a poster child for someone who has survived cancer. And yet, as I write this blog, I have way too many friends currently undergoing treatment for cancer, and I lost a very dear friend this month to a recurrence of clear cell adenocarcinoma of the vagina – the type of cancer I had 34 years ago.

What can I do to mark this occasion? How can I give back to the doctors and researchers who saved my life? While survival rates have improved for many cancers, we still need to find a cure. I suppose, raising money for cancer research, prevention and treatment is the only way I know how to do something. So, in September, I’ll be jumping into the freezing cold water of the SF Bay and will help raise money for cancer research here in the Bay Area. Swim Across America raises money for world-renowned cancer centers across the United States, and here in the Bay Area the money raised goes to pediatric cancer research and treatment. Our two local beneficiaries are UCSF Benioff Children’s Hospital and Oakland Children’s Hospital.

If you haven’t already done so, please watch the video that Growing Bolder made about my cancer experiences and my love of swimming, and/or listen to the radio interview – both were made by a team of Emmy Award-winning TV and radio people who produce and license active-lifestyle and wellness content for the Web, TV and Radio. They like to tell stories of ordinary people doing extraordinary things.

Thank you for reading my blog, for following my story, and for being “out there” for me along the way. If nothing else, I believe my story has inspired and hopefully helped others going through difficult times, whether they be physical or emotional or both. I wish everyone reading this good health and a happy August. Hope to be in touch with you again soon.

Monday, June 13, 2011

It has been a very long time since I've written anything for this blog. I recently sent an email to my family and friends who were following my surgery and recovery in 2009-2010, and a version of that letter is below. I am approaching the 2nd anniversary of my Whipple and the 23 days that I spent at Stanford Hospital. I'm happy to report that I'm doing better than I ever imagined at this point. Below is a copy of that email. I hope those of you following my blog will enjoy the video.

Taking a risk of completely embarrassing myself, and revealing way more than a person should about one’s self, I’m sending you a link (above) to a video that was recently produced by GrowingBolder.com. These extraordinary film producers found me at the US Masters Swimming Nationals meet this past spring in Mesa, Arizona. Growing Bolder is produced by an Emmy award-winning team and delivers empowering stories that inspire audiences of all ages to believe that it's never too late to achieve their dreams. I thought this video would be a great way to update you on how I’m doing almost 2 years (on August 20th) since my last surgery. As you will see, I’m doing well. I still struggle with some aches and pains (and digestive issues), and a terrible case of sciatica, but mostly, I’m doing way better than I ever imagined I’d be at this point. Many of you on Facebook (and a few others of you) may have already seen this, but if you haven’t, it’s about 6 and a half minutes long. For those of you who have known me forever, most of the story is not new to you, but to my “newer” friends, some of it might be a bit shocking. Nonetheless, this is my story and one that I can’t hide from. Those of you on this email list were with me every step of the way in 2009 and 2010, and your support was invaluable to me during that time. I suppose it’s nice to be able to give you such a positive update. Personally, I think some of the statements about me are just slightly "over-the-top"….but I guess that’s what makes for an inspiring video! So, if you choose, watch it with a grain of salt. I'm really just an ordinary person who happens to have had cancer 3 times.

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About Me

I am 62 years old - a mom, a wife, a daughter, a sister and a friend to many. I have a Ph.D. in Epidemiology, but haven't actually worked in the field in years. Since becoming a mom, I have reinvented myself, personally and professionally many times over. My latest profession, and the one that I think suits me best is that of a Health and Wellness Coach. I am also an event director for Swim Across America - an organization that raises money for cancer resarch through swimming. www.swimacrossamerica.org